Trust is irrelevant. We need them to do their jobs, not be drinking buddies. People have the idea that if we just ask nicely, or use exactly the right argument and evidence that they will just have to listen. If that were the case then the illness would've been dealt with properly 30 years ago.

We are dealing with a very entrenched policy. The policy will not change until the social cost of maintaining the policy gets too high. Asking nicely and writing letters to Congress will not move a policy this well defended. Like NIH's Dr Nath said, we need to ACT UP. That was an amazing statement, considering that NIH was a major target of Act Up's criticism.

One wonders just what the hell is going on behind closed doors. We desperately need a whistleblower to reveal who is really making NIH policy.

Click to expand...

Yes, I'm sure when Dr. Nath or Dr. Collins sees the 400th e-mail with the subject "WHY ARE YOU TRYING TO KILL ME PATIENTS!!!" and "WALITT IS TRYING TO KILL US HE MUST GO!!!!!" they are going to take a minute out of their day to see what reasoned, insightful point the writer is making.

Yes, I'm sure when Dr. Nath or Dr. Collins sees the 400th e-mail with the subject "WHY ARE YOU TRYING TO KILL ME PATIENTS!!!" and "WALITT IS TRYING TO KILL US HE MUST GO!!!!!" they are going to take a minute out of their day to see what reasoned, insightful point the writer is making.

Yes, they could say, "Screw this. Why am I spending years of my career trying to help people who don't want our help?" It's happened before, as anybody with any knowledge of the past 20 years in the field of ME research knows. Researchers have stopped working on this illness because they didn't want to deal with aggressive, angry patients. And there have been lots of angry emails directed at 4 people at NIH. At some point, even the most well-meaning, generous-hearted person is going to close his ears.

Hi @viggster thanks for keeping us updated, the information you bring is truly invaluable to us all.

Please don't take it personally, just keep doing your thing and report back what you feel the powers that be need to know.

You are right, it has happened before, 20 years of research HAS caused some researchers to back off. But you know what else has happened before? Rigged or skewed studies, or simply naive study design has caused the root of the condition to NOT be addressed and the result is that these patients continues to suffer.

Just as you can see it coming that NIH bods will get fed up and back off, the (some) folks around here can see it coming that another failed study will result, they've seen it before and they are scared.

Consider this a desperate attempt by forum members to get their voices heard, passions rise and all that, almost their last chance at getting help.

There are really only 2 main issues people have, it can be simplified right down to:

1) entry criteria truly encompassing the nature of the disease (hence the need for a 2 day or more CPET)

2) the inclusion of psychy people in a biological study.

Anything else points to one of these 2 points.

Can you reassure us that these points are being fed back to the people that matter?

Sick people are quite reasonably speaking out against unreasonable proposed study protocols that directly impact them - whose results could alter, for better or worse, the rest of their lives and the lives of countless others.

Playing the patient-blame card is not the way to go.

Addressing the inherent problems with the study, is.

Whatever happened to "partners"? We want an NIH study. We don't want a flawed one that will yield more harm than good. We want to work with the NIH to make corrections. To do our part, we must speak up, and if necessary, out. For the NIH to do its part, it should both listen and act when possible and appropriate.

Sometimes I feel like the daughter invited to a special dinner with the parents to discuss her future, and when she tries to speak is rebuked with, "Shut up! Sit down!"

There are problems with this study as currently proposed, some of them big problems. They may be even dangerous problems. They need to be remedied.

@Skippa is right - there's a collision here between fears and hopes and a huge amount is riding on this study for all of us.

As patients we should be working together, not turning on each other. And if we want to point things out to the NIH, I think we should be doing it clearly and politely - but in numbers. A message gets across best from large numbers saying the same thing, not a few people writing insulting, angry messages.

Playing the you-can't-blame-patients card is just as bad. Some patients and/or advocates have been quite obnoxious to the NIH, and are probably drowning out the reasonable comments. And some reasonable patients are also to blame for cheering on the obnoxious comments, further drowning out any voices of reason.

Preferably constructive communication. Telling the NIH director that he's incompetent, and describing Walitt as a quack without any explanation isn't effective communication. That should be readily apparent.

My impression is that other than the FMD control group removal, they have opted, for the most part, not to listen to us.

Click to expand...

Are they hearing our reasoned objections? Or do they see dozens of patients "liking" senseless tweets regarding incompetence and quackery, then stop listening?

Since we are talking about communicating, what do you think having Wallit and company as investigators communicates to patients?

Click to expand...

Seriously? I spent days looking into their past research, compiling their crappiest statements, and editing the ME-pedia pages to make the information readily accessible. Your comment here is exactly the sort of points-scoring we need to put an end to.

Yes, they could say, "Screw this. Why am I spending years of my career trying to help people who don't want our help?" It's happened before, as anybody with any knowledge of the past 20 years in the field of ME research knows. Researchers have stopped working on this illness because they didn't want to deal with aggressive, angry patients. And there have been lots of angry emails directed at 4 people at NIH. At some point, even the most well-meaning, generous-hearted person is going to close his ears.

Click to expand...

The allegation that patients have been responsible for the neglect of m.e. is a lie; it's the equivalent of the "blood libel" applied to this community, it's an extension of the idea that we have individually either engendered or maintained the disease because of our personalities and actions.

In your open letter you said yourself that the NIH had thrown this population in the basement and then bulldozed the house. Where was the press while this was happening? As David Tuller says somewhere, perhaps the reason people are screaming at times is because they have not been heard. A bit of noise accompanying the first real opening in community/government relationship, is a very small price to pay for the government's refusal and failure over 30 years to recognize an epidemic and act with skill and compassion.

In my naivety I always imagined that the main reason people stopped working on this illness was that they could not obtain funding for their research. It is not clear to me to what extent angry patients were responsible for this.

@viggster I just wanted to say that I was staying away cause the negativity can be overwhelming but seeing your commitment to help and stay positive was helpful in bringing me back into the fold. That and others who continue to see the big picture of we need help regardless because ME/SEID/CFS/WTFD isn't going anywhere.
Hope it's not too cliche but wanted to remind you of this and hope you stay in the fight or come back after a time of rest. I'll be praying for youhttp://prayerfoundation.org/mother_teresa_do_it_anyway.htm

No thanks. I'm not interested in continuing to be a go between. I'll keep talking with other people in the community I trust but I won't be posting here.

Click to expand...

I understand your frustration, this place can be very negative at times and I think you get the brunt of that because you often relay information here.
However your information is always very much appreciated and your opinions also. It is good to have balance on these forums and therefore it would be great if you would reconsider.

I understand your frustration, this place can be very negative at times and I think you get the brunt of that because you often relay information here.
However your information is always very much appreciated and your opinions also. It is good to have balance on these forums and therefore it would be great if you would reconsider.

The allegation that patients have been responsible for the neglect of m.e. is a lie; it's the equivalent of the "blood libel" applied to this community, it's an extension of the idea that we have individually either engendered or maintained the disease because of our personalities and actions.

Click to expand...

See, this is the kind of thing that bothers me. You have chosen to misinterpret my words in the most negative light possible. I did not "blame patients" for the neglect of the past 30 years. I said some researchers have chosen not to work on ME because they didn't want to deal with the patient community. How do I know this? Francis Collins said it to me when I talked to him last fall. Some members of this forum know about specific instances as well. Maybe there is even discussion of it buried in the archives.

I view what's happening now at NIH as positive first steps. They need to keep making moves in the right direction. They will make more missteps, sidesteps, they might even fall down. But there are people inside the place who want to help us. Vicky Whittemore is a fantastic ally for us. She is close to someone with a "contested illness" so she knows what that experience is like. And yet, Vicky has received nasty messages regarding Brian Walitt...and she had nothing to do with him being on the upcoming study. That's the kind of negative behavior that can turn an ally sour.

NIH has to get better at communicating with the patient community. And we would be well served by somehow figuring out how to police our own community better. I don't have the health or energy for it.

I hope folks realize this is a marathon. Thirty years of neglect does not get fixed overnight. There are dinosaurs still roaming the halls at NIH, like at every institution in the world. They have outdated ideas. I don't view them as an existential threat as some of you do, because I see positive action being taken. (As an aside, I'm very disappointed in Erica Verilla's blog post the other day...I respect her a lot and she has chosen to whip up sentiment against a study that could be very important for ME patients.)

As NIH announces more and more pieces of its new ME program, more and more patients will see that positive things are happening. We are not going to get everything we want. Last summer, I worked with ME Action to lobby Congress to include language in a bill that would nix the Trans-NIH Working Group and start a permanent ME program office at NINDS. Congress didn't act and NIH didn't do that either. I didn't get what I wanted. But I didn't decide that this meant THEY WERE OUT TO GET US.

There are more good things happening at NIH than is publicly known. Avi Nath and Ron Davis have been talking lately. I think that's fantastic. Of course, some here on PR and elsewhere will decide that this means that RON DAVIS is now part of the vast conspiracy to keep us all in our beds. What do you call a conspiracy when everyone else is in on it but you?

Now excuse me, I have to go bury a bag of gold coins that the good Dr. Collins mailed to me recently.

(and thanks to those who posted positive messages to me...it's appreciated.)